Girl With Rare Disorder Has One Birthday Wish

Ali Najera is turning 10 next month and it’s a birthday that calls for a big celebration. Diagnosed at age 8 with a rare neurological disorder, making it to 10 years old is a gift in itself for this Texas girl, and Ali wants one thing to mark the occasion.

Ali, one of five children, was diagnosed with neurodegeneration with brain iron accumulation (NBIA) two weeks after her 8th birthday. The disorder is progressive and causes movement and communication difficulties.

“She has iron accumulating in her brain, and it’s actually destroying a part of her brain,” Morgan said. “As it accumulates, it affects her nervous system and her muscle tone, and eventually it will take away her ability to control any of her muscles.”

Though Ali has had the diagnosis for two years, her mother said, it has rapidly progressed within the last year. At the end of July, Ali found out she was going to have to stay in a wheelchair, but she continues to stay positive.

“Even through all this, she always has a smile on her face,” said Morgan.

On Sept. 9, Ali will turn 10, and it’s an important milestone to reach.

“It’s a double digit birthday,” Morgan said. “We don’t know how many birthdays she has left.”

Ali's mother has worked to get out the word of Ali's wish for birthday cards from all over the world to as many people as possible.

Courtesy Tianna Morgan

PHOTO: Ali with her family before church on Easter Sunday, April 21, 2014.

“That’s a wish we hope we can grant,” Morgan said.

Early birthday cards sent to Ali have instantly brightened her day, Morgan said. Though Ali stays in her room a lot because of how difficult it is for her to get around, when cards are delivered she always comes out to read them.

“She loves all of her birthday cards,” Morgan said. “Every single one is special to her.”

“It’s been very inspirational and touching to see how much love is being shown towards Ali,” Morgan said.

People can make Ali’s birthday extra special by sending a birthday card marked with “Ali’s Birthday” to P.O. Box 2586, Jasper, TX 75951.

Need some card-related inspiration? Ali loves princesses, music, coloring, reading and anything that falls under the category of “artsy stuff.”

Courtesy Tianna Morgan

PHOTO: Ali poses with a birthday cookie cake given to her by the staff at the local news station that interviewed her, Aug. 6, 2014.